Down Syndrome
NICHCY Disability Fact Sheet #4
June 2010
Definition
Down syndrome is the
most common and readily
identifiable chromosomal
condition associated with
intellectual disabilities. It is
caused by a chromosomal
abnormality: for some unknown reason, an accident in
cell development results in 47
instead of the usual 46 chromosomes. This extra chromosome changes the orderly
development of the body and
brain. In most cases, the
diagnosis of Down syndrome
is made according to results
from a chromosome test
administered shortly after
birth.
Just as in the normal
population, there is a wide
variation in mental abilities,
behavior, and developmental
progress in individuals with
Down syndrome. Their level of
intellectual disability may
range from mild to severe,
with the majority functioning
in the mild to moderate range.
Because children with
Down syndrome differ in
ability, it’s important that
families and members of the
school’s education team place
few limitations on potential
capabilities and possible
achievements. Each child with
Down syndrome has his or her
own talents and unique
capacities, and it’s important
to recognize these and reinforce them. As the Family
Doctor website states:
In many important
ways, children who
have Down syndrome
are very much the
same as other children.
They have the same
moods and emotions,
and they like to learn
new things, to play and
enjoy life. You can help
your child by providing
as many chances as
possible for him or her
to do these things.
Read to your child and
play with him or her,
just as you would any
other child. Help your
child to have positive
experiences with new
people and places.1
Disability Fact Sheet #4 (FS4)
Incidence of
Down Syndrome
Nearly 5,000 babies are
born with Down syndrome in
the United States each year.2
This means that 1 in every 733
babies is born with this
condition.3 Although parents
of any age may have a child
with Down syndrome, 80%
are born to women under the
age of 35.4
is the
National Dissemination Center
for Children with Disabilities.
NICHCY
1825 Connecticut Avenue N.W.
Washington, DC 20009
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
[email protected]
http://nichcy.org
Down syndrome is not a
disease, nor is it contagious. Its
most common forms usually
do not occur more than once
in a family.
Characteristics of
Down Syndrome
There are over 50 clinical
signs of Down syndrome, but
it is rare to find all or even
most of them in one person.
Every child with Down syndrome is different. Some
common characteristics
include:
• Poor muscle tone;
• Slanting eyes with folds of
skin at the inner corners
(called epicanthal folds);
• Hyperflexibility (excessive
ability to extend the joints);
• Short, broad hands with a
single crease across the
palm on one or both
hands;
• Broad feet with short toes;
• Flat bridge of the nose;
• Short, low-set ears; and
Help for
Babies and TToddlers
oddlers
When a baby is
born with Down
syndrome, his or her
parents should know
that there’s a lot of
help available—and
immediately. Shortly
after the diagnosis of
Down syndrome is confirmed, parents will want to
get in touch with the early
intervention system in their
community.
Early intervention is a
system of services designed to
help infants and toddlers with
disabilities (before their 3rd
birthday) and their families.
It’s mandated by federal law—
the Individuals with Disabilities Education Act (IDEA), the
nation’s special education law.
Staff work with the child’s
family to develop what is
known as an Individualized
Family Services Plan, or IFSP.
The IFSP will describe the
child’s unique needs as well as
the services he or she will
receive to address those needs.
The IFSP will also emphasize
the unique needs
of the family, so
that parents and
other family
members will
know how to
help their young
child with Down
syndrome. Early
intervention
services may be
provided on a
sliding-fee basis,
meaning that the costs to the
family will depend upon their
income.
Help for
School-Aged Children
Just as IDEA requires that
early intervention be made
available to babies and toddlers with disabilities, it
requires that special education and related services be
made available free of charge
to every eligible child with a
disability, including
preschoolers (ages 3-21).
These services are specially
designed to address the child’s
individual needs associated
with the disability—in this
case, Down syndrome.
• Short neck and small head;
• Small oral cavity; and/or
• Short, high-pitched cries in
infancy.
Individuals with Down
syndrome are usually smaller
than their nondisabled peers,
and their physical as well as
intellectual development is
slower.
NICHCY: 1.800.695.0285
To Help Babies and TToddlers:
oddlers:
Accessing the Early Intervention System in Y
our State
Your
To access early intervention services for a child up to his or her
3rd birthday, consult NICHCY’s State Resource Sheet for your
state. It’s available online at: http://nichcy.org/state-organization-search-by-state
There, you’ll find a listing for early intervention under the first
section, State Agencies. The agency listed will be able to put
you in contact with the early intervention program in your
community.
2
Down Syndrome (FS4)
There is a lot to know about
the special education process,
much of which you can learn
at NICHCY, which offers a
wide range of publications on
the topic. To begin, however,
and access special education
services for a school-aged child
in your area, get in touch with
your local public school
system. Calling the elementary
school in your neighborhood
is an excellent place to start.
Health
Considerations
Besides having a distinct
physical appearance, children
with Down syndrome frequently have specific healthrelated problems. A lowered
resistance to infection makes
these children more prone to
respiratory problems. Visual
problems such as crossed eyes
and far- or nearsightedness are
common in individuals with
Down syndrome, as are mild
to moderate hearing loss and
speech difficulty.
Approximately one third of
babies born with Down
syndrome have heart defects,
most of which are now successfully correctable. Some
individuals are born with
gastrointestinal tract problems
that can be surgically corrected.
Some people with Down
syndrome also may have a
condition known as Atlantoaxial Instability, a misalignment
of the top two vertebrae of the
neck. This condition makes
these individuals more prone
to injury if they participate in
activities which overextend or
flex the neck. Parents are urged
NICHCY: 1.800.695.0285
to have their child
examined by a physician to determine
whether or not their
child should be
restricted from sports
and activities which
place stress on the
neck. Although this
misalignment is a
potentially serious
condition, proper
diagnosis can help prevent
serious injury.
Children with Down
syndrome may have a tendency to become obese as they
grow older. Besides having
negative social implications,
this weight gain threatens
these individuals’ health and
longevity. A supervised diet
and exercise program may
help reduce this problem.
Educating Children with
Down Syndrome
When a child with Down
syndrome reaches school age
(after the 3rd birthday), the
public school system becomes
responsible for educating the
child and for addressing the
child’s unique needs related to
his or her disability. Parents
and school personnel will
work together to develop what
is known as an Individualized
Education Program (IEP) for
the child. The IEP is similar to
an IFSP in that it describes the
child’s unique needs and the
services that will be provided
to meet those needs. The IEP
will include annual goals for
learning and much more.
NICHCY offers a great deal of
information about the process
for developing an IEP—
3
especially our parent’s guide
called Developing Your Child’s
IEP—all of which can help
parents learn how to participate effectively in their child’s
education.
Much information is also
available for teachers to learn
more about effective teaching
practices for children with
Down syndrome. It’s important for teachers to take into
consideration the degree of
intellectual disability involved,
the child’s talents and interests, and the supports and
services he or she needs, as
specified in the IEP. Generally
speaking, teachers will find it
more effective to emphasize
concrete concepts with a
student who has Down
syndrome, instead of abstract
ideas. Teaching skills in a stepby-step fashion with frequent
reinforcement and consistent
feedback has proven successful. Other suggestions for
teachers are given on the last
page of this fact sheet.
Today, the majority of
children with Down syndrome
are educated in the regular
classroom, alongside their
peers without disabilities. This
is in keeping with the inclusion movement of the last
decade and the requirements
Down Syndrome (FS4)
Equally clear is this requirement of IDEA:
syndrome, it’s usually important to begin earlier than that.
A child with a disability
[may not be] removed
from education in ageappropriate regular
classrooms solely
because of needed
modifications in the
general education
curriculum.6
Adult life for individuals
with Down syndrome has
changed noticeably from just
two decades ago. Opportunities to live and work independently in the community have
greatly expanded for those
with Down syndrome. This
owes much to the more
inclusive and comprehensive
education IDEA promotes and
to improved public attitudes
towards disability. Today,
there’s a nationwide network
of independent living centers,
as well as apartments that are
group-shared and supervised
for those who need this level
of support. Training, education, and assistance are also
available to eligible adults
with Down syndrome through
service systems such as Vocational Rehabilitation and
Social Security. Adult life
holds many opportunities for
those with Down syndrome,
so it’s important to plan ahead
with optimism and vigor.
For High School Students
with Down Syndrome
of IDEA, which states that
each school system must
ensure that:
Special classes, separate
schooling, or other
removal of children
with disabilities from
the regular educational
environment occurs
only if the nature or
severity of the disability
is such that education
in regular classes with
the use of supplementary aids and services
cannot be achieved
satisfactorily.5
While the student is still in
secondary school, parents, the
IEP team, and the student
himself (or herself!) will need
to plan for the future and the
student’s life as an adult. This
involves considering, for
example, issues such as employment (with or without
supports), independent living
and self-care skills, the possibility of higher education or
vocational training, and how
to connect with adult service
systems. Under IDEA, the
process of planning for transition to adulthood should
begin no later than the
student’s 16th birthday.7 For
adolescents with Down
References
1
Family Doctor. (2005). Down Syndrome: Finding out your child has Down
syndrome. Available online at: http://familydoctor.org/online/famdocen/
home/children/parents/special/birth/338.html
4
Ibid.
5
34 CFR §300.114(a)(2)(ii) of
IDEA.
2
National Down Syndrome Congress. (n.d.). Facts about Down syndrome.
Available online at: http://www.ndsccenter.org/?page_id=614
34 CFR §300.116(e) of IDEA.
7
3
National Down Syndrome Society. (n.d.) Down syndrome fact sheet.
Available online at: http://www.ndss.org/
index.php?option=com_content&view=article&id=54:down-syndromefact-sheet&catid=35:about-down-syndrome&Itemid=74
NICHCY: 1.800.695.0285
6
4
34 CFR §300.320(b) of IDEA,
Transition services.
Down Syndrome (FS4)
Tips for PParents
arents
• Find out what your child is learning
at school. Look for ways to apply it at
home. For example, if the teacher is
reviewing concepts of money, take your
child to the supermarket with you to
help keep track of what money you’re
spending.
• Learn about Down syndrome. The
more you know, the more you can
help yourself and your child. See the
list of organizations below.
• Love and play with your child. Treat
your son or daughter as you would a
child without disabilities. Take your
child places, read together, have fun.
• Look for social opportunities in the
community (such as Scouts) or activities
offered through the department of sports
and leisure. Joining in and taking part will
help your child develop social skills and
have fun.
• Encourage your child to be independent.
For example, help your son or daughter
learn self-care skills such as getting dressed,
grooming, and doing laundry.
• Talk with other parents whose children
have Down syndrome. They can be a
fountain of practical advice and emotional
support. Visit the websites of the organizations listed below to see if they have a
parent group nearby.
• Give your child chores. Keep in mind his or
her age, mental capacity, attention span,
and abilities. Divide tasks into small steps.
Explain what your child is supposed to do,
step by step, until the chore is done. Demonstrate. Offer help when it’s needed and
praise when things go well.
• Be patient, be hopeful. Your child, like
every child, has a whole lifetime to learn
and grow.
• Work with the professionals who are
working with your child. Participate in
team meetings where your child’s education or program is being planned, share
your unique knowledge of who your son or
daughter is, advocate that the program
address your child’s needs.
• Take pleasure in your beautiful one. He—
she—is a treasure. Learn from your child,
too. Those with Down syndrome have a
special light within—let it shine.
Organizations
NDSS offers authoritative information about
Down syndrome, including a new parent video, A
Promising Future Together: A Guide for New Parents
of Children with Down Syndrome
National Down Syndrome Society
1.800.221.4602 | www.ndss.org/ (English)
http://esp.ndss.org/index.php (Spanish)
National Down Syndrome Congress
1.800.232.6372 | www.ndsccenter.org (English)
www.ndsccenter.org/espanol/ (Spanish)
Resource of Special Note
Woodbine House publishes an impressive collection
of low-cost books and DVDs on Down syndrome,
including a Parent’s Guide (in English and Spanish)
and materials for teachers. Call 1.800.843.7323 or
visit: www.woodbinehouse.com/DownSyndrome.29.0.0.2.htm
NICHCY: 1.800.695.0285
5
NDSC is also an authoritative source of information on Down syndrome, offering such resources
as its New Parent Package, a collection of materials
refined over years to provide new and expectant
parents with an initial understanding of the
challenges— and joys—of raising a child with
Down syndrome.
Down Syndrome (FS4)
Tips for TTeachers
eachers
• If you’re not part of the student’s
IEP team, ask for a copy of this
important document. The student’s
educational goals will be listed
there, as will the services and accommodations that he or she is supposed to receive, including in your
class.
• Learn as much as possible about
Down sydrome. The organizations mentioned in this fact
sheet can help you identify
techniques and specific strategies to support the student’s
learning. We’ve included some
additional suggestions below.
• This may seem obvious, but sometimes the
appearance of Down syndrome can give
the mistaken impression that the child
cannot learn. Focus on the individual child
and learn firsthand what needs and capabilities he or she has.
• Realize that you can make a big difference
in this student’s life! Use the student’s
abilities and interests to involve and
motivate. Give lots of opportunities for the
student to be successful.
• Talk candidly with your student’s parents.
They’re experts and can tell you a great deal
about their daughter’s or son’s special
needs and abilities.
• Work with the student’s parents and other
school personnel to develop and implement a special educational plan (IEP) that
addresses the individual needs of the
student. Share information on a regular
basis with parents about how things are
going for the student at home and in
school.
• Talk to specialists in your school (for
example, special educators), as necessary.
They can help you identify methods that
are effective for teaching a student with
disabilities, ways to adapt the curriculum,
and how to address the student’s IEP goals
in the classroom.
• Be as concrete as possible with the student.
Demonstrate what you want to see happen
instead of giving only verbal instructions.
When you share concrete information
verbally, also show a photograph. Give the
student practical materials and experiences
and the opportunity to touch and examine
objects.
• Divide new tasks and large tasks into
smaller steps. Demonstrate the steps. Have
the student do the steps, one by one. Offer
help when necessary.
• Give the student immediate, concrete
feedback.
FS4—June 2010
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